This is a blog I've started to help me deal with the diagnosis of having gastroparesis. It was suggested to me that a blog/diary might help me feel better by venting my frustrations and struggles. Also, I hope I can help others who may have the same thing through my own experiences.
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Thursday, April 14, 2016

We have all been there. We see a post or get a call, and the floor drops out from under us. We don't know what to do or what to say because we have just been told that one of our loved ones has passed away, without rhyme or reason, due to complications from a chronic illness. How do you handle that? It seems like it goes beyond the regular grieving process because you watched this person suffer and wrestle with a chronic illness for a long time before they passed. You get angry because people make off hand comments that they knew this person was going to die because they were so ill, yet the last time you talked to your loved one, they were fine. So, how do you deal with the news, knowing that you will never get to have another conversation? Knowing what you do about their illness?

With Gastroparesis, it can be a lot more sneaky. I mean, most people seem fine on the outside but are suffering immensely behind the scenes. If you want to know more about how people with Gastroparesis live and what they suffer from, I have great resources in my blog. But this article, this is to honor those fallen GP Warriors, those who have given their lives to fight for a cure for Gastroparesis. We will never forget them and we will keep them alive in our hearts and our memories, and keep them alive in our fight. So, again, how do you deal with the loss? Based on my personal experiences, I'm going to share some things that really help me when I lose a loved one, especially really good friends, to an invisible illness.

I have another article with the stages of grief in it, entitled, "The Grieving Process for a Chronic Illness, and How to Overcome It" that you can find by clicking here: http://www.emilysstomach.com/2014/02/the-grieving-process-for-chronic.html. This will tell you about the stages of grief. I recommend reading it so that you can prepare yourself and to know how grief effects people.

The only logical answer I can give you is that there is no way to get over a loss. You can move past it, but you never truly get over losing a loved one, especially to a chronic illness.

Lean on support groups, with other people who have gone what you are going through, to help you through this difficult time. I recommend that highly, because people are social animals, and it helps to have empathy and people on your side with what you're going through. I started a Facebook Group, Grief Group for GPers, for those who have lost loved ones to Gastroparesis and who want to talk about it. We ask that everything posted in the group, stays in the group, due to family privacy matters. We also have an album of loved ones who have passed that we keep updated, so that we never forget why we are fighting and who we are fighting for, when we fight for things like awareness, research, and a cure for Gastroparesis. The group can be found here: http://www.facebook.com/groups/gpgriefgroup/.

Joining a support group can definitely help, but I also recommend writing. Writing helps me a lot. When I'm able to get out all of my feelings onto a laptop or a piece of paper, I feel purged and a lot better. You can tear up the paper afterwards or delete a word document, if you don't want anyone else to stumble across it but it helps to get your feelings out. I write this blog to help me deal with even having an invisible illness and most days, it helps me keep my sanity. You don't have to start a blog, but keeping a notebook will help. Like I said, you don't have to keep your feelings once you've written them down. You can throw them away, tear them up, do whatever you like to the page(s) that you write. I like to keep mine to reflect back on how I was feeling and how far I've come since that point. I have a journal that I write in and carry around with me, in addition to this blog.

Lean on your friends. I know this seems like a no-brainer, but your friends are there to support you and help you. Invite them over to your house (I don't know about you, but it's hard for me to go out since I suffer from nausea and vomiting a lot due to GP, gastroparesis, but everyone's GP is different) and put on a movie that you all love, play a game, board or video, and talk. It helps having a distraction and your friends will be there for you. You can tell them about your loved one, relive memories, and honor them in your own way. It helps, at times like these, to have friends you can depend on to make you feel better and the interaction will really help, especially if you've been keeping yourself in isolation.

And the last thing that I would recommend, especially if you can't go to the funeral, is to have your own ceremony. I know this sounds weird, but hear me out. You can do something simple and personal, between you and the loved one you lost. I take flowers, they can be hand picked or bought at a store, and I sit in the backyard. I place them at the edge of the yard, and I talk to my loved one that I've lost. I tell them how I feel, and you can do this in your head if you want to, especially if there are people outside. The important thing is to let out any pent up tears and feelings. Talk to the person you lost like they were there with you, next to you. Lay down the flowers and have your own moment. You don't need a funeral to let them know how you feel. I know I have a hard time going places because I vomit quite a lot, and I am always nauseated. Being in a car exacerbates that feeling, because I get motion sick, so I have my own ceremony, in my backyard. I know this sounds odd, but it really helps me. It helps me say goodbye and saying goodbye, in your own way, is very important. It's important that you let go. You can do whatever makes you feel comfortable, this is just my own little ritual I want to share with you to give you an idea of the things you can do. This is just very personal for me, and this is something I've never told anyone. A good friend of mine, whom I lost, once told me that she didn't want to die because of the suffering she would cause to the people left behind. I still think about that and she's been gone for twenty years.

We have lost five people so far, just this month, from complications due to Gastroparesis. It breaks my heart and saddens me...but it also gives me purpose. I want to continue fighting for those people whom we've lost, and I want to do it to keep them alive. One day, we will find a cure. But, for right now, I have high hopes for more awareness and research. I actually met a lady at the dentist who knew all about Gastroparesis, and I didn't have to explain it to her. She had read about it somewhere. It's going to happen. It may be slow, but awareness is taking shape, and hopefully, research and a cure aren't far behind it.

May our loved ones walk among the stars and be proud of us for carrying on and fighting for Gastroparesis.

My friend shared this article with me and I wanted to post it here, because it is amazing and I think it would help with the grief.

"When Asked for Advice on How to Deal with Grief, This Old Man Gave the Most Incredible Reply.

Someone on reddit wrote the following heartfelt plea online:

'My friend just died. I don’t know what to do.'

Many people responded with words of encouragement, but one response in particular, by an older gentlemen, really stood out from the rest…

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to 'not matter.' I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love.

So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out.

But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks."

I do not have the source for this, but it does help me in times of grief: